Epilepsy and ketogenic diet

Did you know that we can “thank” epilepsy for the emergence of the ketogenic diet? While a majority of you is probably practicing the diet for weight loss or general health improvement, epileptic patients use it to significantly ease their everyday life, making it as seizure-free as possible.

Epilepsy and ketogenic diet

As the most common neurological disorder, epilepsy affects approximately 1% of the population.[1] It primarily appears in the form of repeated seizures that generate in the brain. Basically, a seizure happens when the brain’s normal electrical activity is briefly disturbed, which causes the nerve cells to fire off in an unusual pattern. Epileptic seizures are diverse and complex, ranging from convulsions (motor seizures) to subtle changes in thought, mood, or behavior.[1] While the frequency and severity of seizures can often be reduced by antiepileptic medications, such treatment appears to be insufficient for 25 – 30% of patients. Moreover, approximately 10% of patients do not respond to any antiepileptic drug at all.[2] This is where the ketogenic diet comes in.

The aid called ketogenic diet

The ketogenic diet has been mostly used as a treatment for drug-resistant childhood epilepsy, but it is showing promise to have an impact on adults with epilepsy, as well.[3] A variety of studies have shown that half the children on the diet will have 50% improvement in seizures, and about one-third of dieting children will show more than 90% improvement. Some, around 10 – 15%, will even go seizure-free on a continuous ketogenic diet.[2] Still, as with most treatments, the diet will not be successful for everyone. One of the reasons sometimes being that some patients fail to fine-tune their diet, and/or stop with the regime completely, before even coming to see possible improvement.

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For some, the diet is simply too difficult to follow, while others avoid it due to certain illness and contraindications. Nonetheless, most experts agree that the ketogenic diet should be considered after two or three medications have been shown to bring insufficient improvement of epileptic seizures. However, even if the seizures are well under control using medications, side effects might sometimes be too difficult to bear (e.g. impaired mental clarity and ability to learn). In such cases, the ketogenic diet can prove to be of great aid.[2]

History

Besides prayers and voodoo, fasting has been mentioned as a treatment for epilepsy in biblical times and in the literature of the Middle Ages. But it wasn’t until 1921 that fasting as a treatment for epilepsy was reawakened. In that year, a pediatrician, Dr. Rawle Geyelin reported successful treatment of severe epilepsy by fasting.[2] Understandably, prolonged periods of starvation, in hope to control the seizures, are quite unpleasant. In the same year, Dr. Wilder from the Mayo clinic proposed that a diet high in fat and low in carbohydrate might simulate metabolic effects of starvation, therefore help with epilepsy. As the diet proved to be successful in many patients, it was widely used through the 1930s. Later, with the rise of new anticonvulsant medications, the diet was used less frequently.[2]

In 1993, there was a 2-year-old boy named Charlie, who had developed heavy multiple epileptic seizures that did not respond to any medication at all. After numerous hopeless medical treatments, Charlie’s father brought him to John Hopkins Hospital. There, the boy was put on the ketogenic diet and in one-week time, his seizures were under control. Charlie’s father, wanting to expand the awareness and the use of the ketogenic diet, created the well-known Charlie Foundation. Its influence has since gone global. The Foundation has helped ketogenic diet regain popularity as an effective treatment for epilepsy.[2]

How does the ketogenic diet work?

Actually, the exact mechanism of action remains unclear. In fact, the same is true for antiepileptic drugs. Anyhow, it is possible that the ketogenic diet is so successful in epilepsy treatment because it mimics starvation. Lack of glucose in the brain can lower the excitability of nerve cells. The ketone bodies become the main fuel for the brain, instead of glucose.[4] Supposedly, this could lead to change in dynamic processes between inhibitory and excitatory neurotransmitters. Studies in mice have shown that such state of ketosis helps to inhibit the deviant firing of the brain’s nerve cells, which possibly leads to seizure protection.[3]

A variety of ketogenic diets

Roughly, we can talk about four approaches of ketogenic diets as treatments for epilepsy; The classical approach and its three alternatives.

The most traditional one, the classical ketogenic diet, allows 10 – 15 g of daily carbohydrate intake, and only 1 g of protein per kg of body weight. The remaining energy is supposed to arrive through fat. This traditional approach has introduced the term “ketogenic ratio,” which describes the ratio of ketone-producing foods to ketone-reducing foods. So 4:1 ketogenic diet means that 90% of total energy derives from fat, which is ketone-producing.[5] Carbohydrates and protein are, on the other hand, ketone-reducing. The former more so than the latter.

In 1971, a modification of the classical ketogenic diet was proposed, using medium-chain triglycerides (MCT) as an alternative fat source. The main difference between the two variations of the diet lies in the metabolism of triglycerides. MCT facilitate more rapid and greater oxidation of fatty acids than the “traditional” long-chain triglycerides. MCT are absorbed more efficiently and are carried directly from the digestive system to the liver, resulting in a higher ketone yield per kilocalorie of dietary energy.[4] This allows higher protein (10%) and carbohydrate intake (17%), while less total fat (73%) is needed. Studies have shown that the classical and MCT approaches do not differ significantly in controlling epileptic seizures. On the other hand, the MCT can cause more gastrointestinal side-effect, especially if introduced too quickly.[5]

The classical ketogenic diet does not only limit carbohydrate and protein intake. It also restricts calories and fluid intake. All this rigidity can make it intolerable for some patients. It turns out that an alternative approach, modified Atkins diet (MAD), can help some patients, as well.[6][2] In fact, MAD is what a lot of people without epilepsy practice as a ketogenic diet in order to lose weight and/or improve their health in general. This approach also restricts carbohydrate intake to 10 – 20 g per day, but it is more liberal with protein and calories, while it still encourages high fat intake. Its key feature in epilepsy treatment is ketosis induction. While a number of studies have shown its success in controlling child epilepsy, the MAD also shows promise for adult patients with epilepsy.[3]

The fourth, the newest, and the most liberalized diet regime, if you wish, is based on the principle of minimizing the increase of blood glucose. Low glycemic index treatment (LGIT) uses low carbohydrate intake, where carbohydrates are supplied solely in the form of low glycemic index (GI) food.[7] In short, GI describes the tendency of foods to increase blood glucose, usually compared to sugar. The GI of the foods allowed on this diet has to be below 50 in order to minimize increases in blood glucose.[5] Carbohydrate intake can be as high as 40 – 60 g per day, while protein and calorie intake are only loosely monitored.[5] Limited studies have shown that LGIT can be helpful with some patients[7], but its main advantage, compared to the classic ketogenic diet, lies in its palatability. For example, the diet allows consuming lentils, grapefruits, and even high-fiber bread.[7]

Side effects of ketogenic diet

Generally, the ketogenic diet is well tolerated and has fewer potential side effects than most medications. Still, there can be downsides for child patients that might manifest as lack of weight gain, slightly decreased growth, constipation, and kidney stones, to name the most prominent. On the bright side, all these side effects are treatable and even reversible without having to give up the diet.[2]

Psychological aspects of ketogenic diet

Ketogenic diet brings a lot of change, not only for the patient alone but also for the whole family and family’s closest environment. The regime requires a lot of commitment and a lot of work, especially initially. It is a big undertaking even for families who grow to expertise in ketogenic meals and manage to organize their lives around the diet. From this perspective, anticonvulsant medication is a lot easier to use, especially if they work and don’t bring significant side-effects.[2] However, if the drugs don’t work, the patient’s family needs to be well equipped with knowledge on the ketogenic diet before initiating it.

One of the significant factors playing role in the diet failure is lack of commitment. This can arise either on the family’s or on the physicians’ side. The diet requires significant investment, not only of time and energy to prepare the meals, but also to face potential failures and even sabotages.[2] To illustrate, let’s say that grandparents of the child, who is suffering from epilepsy, refuse to follow the diet and think that “one shortbread cookie won’t hurt our dear grandson.” This alone requires a great deal of resolving issues inside the family.

A psychologist, as a member of the medical team supervising the child’s treatment, can be of great support, working with the whole family if possible. First of all, the family needs to be aware that the ketogenic diet is a process, not an event. Committing to the diet requires a lot of faith. The parents and the rest of the family must believe that the diet can work. It does take patience and sacrifice, though. Nonetheless, parents’ expectations should stay realistic and sometimes need to be limited. First, they have to realize that the diet will unlikely completely control the seizures. Still, for some individuals, that is exactly what happens. Second, it is desired that the child gets rid of medication completely, but, unfortunately, that is not a reality for everyone.[2] Last but not least, the ketogenic diet needs time. More so if the medical team is looking for the best combination of diet and medication. Not to mention fine-tuning the diet and getting accustomed to the whole new lifestyle.

It is completely understandable that for caretakers not feeding a child as desired is a difficult thing to do. Thus, support of medical staff and other parents is very important here, as well. And let’s not forget the children alone. Besides adjusting to the changes that the diet itself brings, they might also suffer from feelings of isolation when they find themselves eating foods that are completely distinct from what their peers can have. Such feelings need to be addressed to support the child’s social development as much as possible.

Still, in the process of psychological preparation, the emphasis is on the faith and commitment of the whole family. Any doubters in the family will normally focus on initial difficulties instead of focusing on a decrease in seizures.[2] This can lead to too much initial frustration that can reinforce the doubts, which can lead to weak commitment, more and more incorrectly prepared meals, and, in the end, giving up before even giving the diet a proper chance. On the other hand, positive thinking can help parents overcome initial frustrations easier, lead them to sacrifice their time and energy more willingly, and do whatever is necessary for the child to have fewer seizures or even become seizure-free.[2]

Keep in mind

The primal goal of the ketogenic diet in epilepsy treatment is lowering the frequency, difficulty, and duration of seizures. Sometimes the diet also helps improve the patient’s mental clarity, and/or it lowers the need for medications. Bringing the patient’s body into ketosis can do all this. When putting a child on the ketogenic diet, caretakers should do so under proper medical supervision and receive adequate psychological support. This will help them bring the whole family to commit to the regime, in order to give the diet a fair chance for success.

The primal goal of the ketogenic diet in epilepsy treatment is lowering the frequency, difficulty, and duration of seizures. Sometimes the diet also helps improve the patient’s mental clarity, and/or it lowers the need for medications. Bringing the patient’s body into ketosis can do all this. When putting a child on the ketogenic diet, caretakers should do so under proper medical supervision and receive adequate psychological support. This will help them bring the whole family to commit to the regime, in order to give the diet a fair chance for success.

Please note that I am not a nutritional or medical professional. I do not give out any medical advice. I only share my own experience on this blog and encourage you to consult with your doctor before starting any diet or exercise program. The nutritional information provided for my recipes are estimates. Please calculate nutritional information on your own before relying on them. None of the recipes I post are meant to be used by any specific clinical population. The ingredients in my recipes do not affect my glucose levels or cause any allergic reactions to me. You should use my recipes and shared experience at your discretion. I expressly disclaim any and all liability of any kind with respect to any act or omission wholly or in part in reliance on anything contained on this website.

2 Comments

I have first hand experience with the ketogenic diet and epilepsy in children. My son was 14 months old and had seizures that couldnt be controlled with medication, the side effects of medication are awful. On the diet, we had 2 years of improvement and relative peace. We lost our son to RSV, when he was 4. To the people and Dr’s who say the diet is difficult or to hard. Watching your child have multiple types of seizures, body contortions and hold his breath until he turns blue, is hard. Following a diet, in comparrison, thats easy. Hope, to have hope, you must find something to believe in, when there is no reason left, to believe in anything. I hope, you have hope. Matthews Mum.

Deborah, thank you for sharing your experience. I am so so sorry to hear about your loss. I hope your comment brings an additional dose of hope to those who need it, though. All the beat to you and yours.